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  • February 25, 2019 at 2:47 pm

    Can anyone on this forum explain to me what I might expect as our grandson begins his therapy. He is not able to relate what he is feeling other than to “hand sign ouch”

    If he may feel a sensation from the infusion, knowing this will assist us in explaining it to him.

    Will the infusion cause him to be tired or feel ill (nausea, etc)? The only thing we have learned is the possibility of a headache.
    If so, will these feelings increase with additional doses or does his body adjust? As I shared with Electra the hardest part of this adventure – if you can call it that – is the not knowing. Any input from those of you who have been there and done that will be greatly appreciated. And I do mean “GREATLY”.

    It seems I had other questions to run by you but my mind is all tangled up with the upcoming events. I’m almost positive these will materialize as soon as I hit the “Send” button. Thanks.

    February 25, 2019 at 1:24 pm

    Hi Electra, Your timing is spot on. Jason begins his therapy tomorrow. The first dose will take place in a hospital out-patient infusion center followed by three consecutive days of home infusions. He was originally scheduled in a different center but they cancelled at the last minute because the nurses were concerned that he might experience side effects. I have been literally on the verge of a melt-down over this whole ordeal. The “not knowing” is the hardest part: Not knowing if the diagnosis is accurate; not knowing how to explain to Jason what is about to take place; not knowing how he will respond to treatments (physically and emotionally); not knowing what we can expect from the infusions; the list goes on and on.
    When life was gloomy or she was stressed about something my Mom would say “This too shall pass.” This promise has been my salvation many times, but in this instance I’m not feeling the same comfort and peace from this knowledge.
    Thank you for thinking of us. Hearing from you made my day. I promise to keep in touch and hope you will do the same.

    December 23, 2018 at 5:13 pm

    Electra, I couldn’t let another day pass without expressing my gratitude for your timely and worthy responses. Thank you. I’m so sorry to learn of your birth deformities. Life is tough enough and no-one needs another challenge to overcome. Your therapy dough and play-dough are basically the same. I’m thinking that this wouldn’t interest Jason sufficiently to use as a distraction but its worth a try. I spent most of yesterday watching u-tube videos of people on IVIG but found nothing that demonstrated the procedure. Perhaps this is not the way to go anyway. He will be exposed to the procedure when we introduce him to the infusion unit. Time will tell. Since he has always been a good sport about procedures I’m hopeful that he will take this infusion business in stride. too.
    Thanks again. May you have a blessed Christmas filled with family, friends, good food and lots of fun memories in the making.

    December 21, 2018 at 11:43 pm

    I hope I’m doing this correctly. In response to Electra, thank you for your input. One never knows exactly what to say to another person’s distress.

    I’m aware of weighted blankets. An acquaintance has made several for autistic children she has met but I hadn’t thought about one for Jason. I sometimes forget his intellectual age because he is a 6’2″, 180 lb guy. He does have a favorite comforter plus a couple of stuffed animals that we hope will be helpful during his infusions. I like your play-do suggestion and I think it is worth a try although a bit tricky since his hands are “fisted” with full use of only his thumbs and first fingers. I’m in the process of loading videos and slide shows of family and pets onto his Nabi tablet. If there is sufficient space I will download a u-tube of wrestling match. His Nabi already has videos of Monster Jam and remote control car races. These are his favorites for entertainment. Crossed fingers they are sufficient distraction during his infusions.

    Today I spoke with a knowledgeable gentleman who pretty much validated the doctor’s diagnosis of CIPD. Hubby and I were wondering/hoping if there were a chance that the doctor was wrong. Limited insurance approval arrived today. It appears that we will soon join the “IVIG infusion world”. Now to find a means of communicating to Jason what is about to transpire. I wonder if there is a video of the IVIG procedure available. I’ll ask the organization and search on-line. This may or may not be helpful. If you or anyone has any suggestions we welcome them.

    Thanks again for responding to our inquiry. You don’t know how much it meant to find your message in my mail box. You’re a jewel.